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DHwCFS

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I Respectfully Reserve the Right to Be Optimistic

I have been ill with CFS for 18 1/2 years. I have endured all the dismissal and denial that has been described so well in this forum. Now, it is very disappointing to have medical professionals dismiss the new XMRV research before seeing where it leads. Based on the abysmal record of everyone in the past who should have been supporting and helping CFS patients, I expect pessimistic medical professionals to at least take a wait and see attitude concerning research regarding XMRV and it's relationship with CFS. To immediately deny any chance of success with the XMRV research reminds me too much of the doctors who so quickly said: "CFS is not a real physical illness". Since we don't know what causes CFS, let's remain open to all possible causes including the very real possibility of cause by XMRV. Let the needed research take place. If it shows XMRV is not the cause, we will accept that disappointment the same way we have accepted all the other disappointments along the way. Until then, I reserve the right to be optimistic.
 
K

_Kim_

Guest
Another article from RGJ

Hundreds request test for retrovirus

"We've gotten hundreds of requests for the test from around the world, but we can't offer it outside the United States yet," she said.

The institute plans to eventually make the tests available in other countries.

"The way people access clinical laboratory tests in other countries is very different than in the United States," Whittemore said. "Each country has its own standards and requirements, so until that situation changes, you have to work within each system. It takes a little while and we are working as quickly as we can with many different scientific groups in order to continue the process."
Another major step is to determine whether insurance companies will then cover the tests, Whittemore said.

The net proceeds from the tests for XMRV and other tests that aid the diagnostic process will be used to further the Whittemore-Peterson Institute's research, she said.
 

Summer

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Chronic fatigue syndrome, cancer linked to new virus

"A newly identified virus has been found to be linked to chronic fatigue syndrome and might also provide clues about how to prevent prostate cancer, according to a report this month in the journal Science. Called XMRV, the virus is transmitted in blood and body fluids and might be a significant public health threat."

"XMRV, short for xenotropic murine leukemia virus-related virus, affects the immune system. It exists in blood and body fluids and is readily transmitted.

Chronic fatigue syndrome sufferers relatives who had been diagnosed with neuroimmune diseases such as atypical multiple sclerosis, fibromyalgia and autism also tested positive for the virus, though these data were obtained after the publication and are still preliminary."

"Researchers continue to seek answers to many unanswered questions about the virus, including how it got into the human population, how it acts to cause disease and whether the virus alters the risk of cancer development in people who have chronic fatigue syndrome."
 
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Slanted Science Oct 11, 2009

Levi found this article,

Chronic Fatigue Syndrome (ME) Caused By Virus Associated With Prostate Cancer

in Slanted Science, SlantedScience.com delivers daily science news articles, with a touch of humor

http://www.slantedscience.com/2009/...sed-by-virus-associated-with-prostate-cancer/

There's a good rendering of xmrv

In a welcome example of restraint by scientists writing these kinds of new cause found for disease X reports (Im looking at you, Andrew Wakefield), the authors accept that this is still circumstantial evidence. The paper admits that XMRV may be involved with the disease development, or it may be that the disease simply makes people more susceptible to infection with the XMRV retrovirus.

Best of luck with future research to the scientists. To ME patients: please dont get excited just yet, despite any sensationalist reports you may read. This is a theory about the cause of the disease, and is not waterproof.

Dont Hold Your Breath, But This May Lead To: a simple treatment for ME, or chronic fatigue syndrome. Retroviral drugs, such as are currently in use treating HIV patients.
 
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The New Yorker Oct 15 09

gracenote found this article in the New Yorker - Back Issues: Laura Hillenbrand
an interview with Laura Hillenbrand, including her reaction to the xmrv news

http://www.newyorker.com/online/blogs/backissues/2009/10/back-issues-laura-hillenbrand.html

The C.F.S. community is all abuzz. I’ve never seen people this excited. And it is for good reason. As for myself, I am guardedly optimistic. I’ve been around this block before. The findings are very preliminary and they do need to be replicated. It needs to be demonstrated that this virus is a cause and not a bystander. But, with that said, the findings are stunning.
 

Summer

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Top scientists to meet at Cleveland Clinic on trail of XMRV, a suspect in prostate cancer

In October, a team of researchers from the Clinic, the University of Nevada at Reno and the National Cancer Institute reported finding the virus in the majority of patients they studied who had chronic fatigue syndrome. CFS is a debilitating disorder marked by profound fatigue, muscle pain, impaired memory and other symptoms. Its causes are unknown.
Capitalizing on the excitement and heightened spirit of collaboration, 75 of the top scientists nationwide studying XMRV are flying in to convene Wednesday at the Clinic.

"This is the first meeting of the major players in the area of XMRV," said John Coffin of the department of microbiology at Tufts University in Boston. "I think there's going to be a lot of excitement and a lot of new information presented."
"We're learning things at such a rapid pace that we need a venue to exchange ideas and information," said Dr. Ila Singh, a professor in the University of Utah's department of pathology and senior author of the research involving prostate cancer patients.
How did XMRV get its name?

It's a descriptive name. Xenotropic, which means the virus came from mice but mice are immune to its effects. It does affect other animals. Murine leukemia, which is the parent virus. Related Virus.

How does XMRV affect animals?

XMRV is closely related to a virus that causes leukemia, lymphoma and neurological diseases in animals. [Research] suggests that the human version could cause similar disease.
 
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WCRN Nov 10 '09

WCRN Tuesday Checkup: In Search of a Cause of Chronic Fatigue Syndrome

Strange to me - a 3 minute radio interview with the reporter, Angela Townsend, covering the Cleveland Institute meeting for the Plain Dealer


Most people have probably never heard of the virus XMRV, but it's been a hot topic in the healthcare community since last month. That's when scientists at the Cleveland Clinic were among a group of researchers that discovered a possible link between that virus at chronic fatigue syndrome. Dozens of the top scientists nationwide studying XMRV are flying to Cleveland for a meeting at the Clinic Wednesday. For this week's Tuesday Checkup ideastream's Eric Wellman sat down with Angela Townsend who is covering this story for the Plain Dealer.
 

Sing

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Language Translation Tool

From a post by Kim

"XMRV news in other languages: All I do is copy the URL into Google Translator, select the languages and it does a pretty good job of providing an English translation."
 
K

_Kim_

Guest
Infectious Disease Alert

Chronic Fatigue Syndrome Could a "Stealth Virus" Be Lurking? by John F. Joseph, MD, FACP, FIDSA, FSHEA, Associate Chief of Staff for Education, Ralph H. Johnson Veterans Administration Medical Center; Professor of Medicine, Medical University of South Carolina, Charleston, is Associate Editor for Infectious Disease Alert.

We are dealing here with intricate science that surely took these 13 scientists and a host of technicians years to produce. Yet the paper contains astounding findings
The next experiment was quite ingenious. PBMCs from CFS patients were co-cultured with LNCaP cells, the ones defective in RNaseL pathways. The LNCaP cells became infected, as shown by presence of XMRV gag and env proteins and by the presence of whole virus, as seen by electron microscope both at the time of infection and upon release. The electron micrographs are quite stunning.
It was courageous of Science to publish this paper because there are obvious epidemiologic data missing from the report. Still, patients with CFS can clearly see from this article the sophistication and dedication of scientists studying CFS, giving them hope that there will be some etiologies discovered in the near future.
As one of a group of physicians who has recognized and managed patients with CFS for many years, my bias is to believe the validity of these current data.
 
K

_Kim_

Guest
Here is a link to the first page of the article: A Big Splash From an Upstart Medical Center

In the spring of 2006, they met Dr. Judy A. Mikovits, a virus expert who had spent 22 years working at the National Cancer Institute. She had left the institute in 2001 to get married and move to California, where she went to work for a drug development company that failed. She was tending bar at a yacht club when a patron said her constant talk about viruses reminded him of someone he knew in Nevada. That person was a friend of Annette Whittemores. Dr. Mikovits soon found herself at a conference on chronic fatigue syndrome.
I knew how serious a retrovirus is, Mrs. Whittemore said. I was very concerned, knowing there would be serious implications. My second thought was, of course it was going to be something serious like that. Look at my daughter and how ill she is. Why would we expect it to be something simple? I also felt like the weight of world was on my shoulders. We would have to be telling people some very bad news.
AMONG those expected to try to replicate the XMRV findings is the Centers for Disease Control and Prevention. But Dr. William C. Reeves, who directs the agencys research on the syndrome, has said that he does not expect to find the virus in blood samples from patients. He said that no other studies had ever proved a virus to be the cause, and that stress and a history of sexual and emotional abuse were more likely to play a role in many cases. I blame the C.D.C. for most of this mess, Mrs. Whittemore said, adding that thinking like Dr. Reevess was what drove her to start her own research center.
She is just really very, very sick, Mrs. Whittemore said. Shes had this for a long time. Weve got to get something for her as soon as possible. That is the driver for the speed on this. I dont want to lose her. I cant lose my daughter. I dont want to win this battle and lose the war.
 

Summer

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Could a "Stealth Virus" Be Lurking?

From Infectious Disease Alert

Abstract & Commentary

By John F. Joseph, MD, FACP, FIDSA, FSHEA,
Associate Chief of Staff for Education, Ralph H.
Johnson Veterans Administration Medical Center;
Professor of Medicine, Medical University of South
Carolina, Charleston, is Associate Editor for
Infectious Disease Alert.

Dr. John is a consultant for Cubist, Genzyme, and
bioMerieux, and is on the speaker's bureau for
Cubist, GSK, Merck, Bayer, and Wyeth.

Source: Lombardi VC et al. Science. 8 October 2009
(10.1126/science. 1179052).

It has been known for years that patients with
chronic fatigue syndrome (CFS) have a defect in a
major antiviral pathway, the 2-5A/RNase L pathway.

The RNaseL produces non-specific viral cleavage and,
thus, protects us from many viral infections (innate
immunity).

Defects in this pathway not only lead to
susceptibility to viral infections but may also
increase our susceptibility to tumor development.

The RNaseL gene, called Human Prostate Cancer 1
(HPC1), has a variant R462Q related to a potential
etiologic agent of prostate cancer, a novel human
retrovirus, xenotropic murine leukemia virus (MuLV),
named XMRV.

So, it was by a bit of serendipity that a group of
workers headed by several from the Whittemore
Peterson Institute in Reno, Nevada, asked if XMRV
could be associated with CFS.

What led to any rationale connection between
prostate cancer and CFS is not clear, but the
question led to a series of experiments that
culminated in a very recent publication showing an
association between the presence of this retrovirus
in the peripheral blood mononuclear cells (PBMCs) of
patients with CFS.

We are dealing here with intricate science that surely
took these 13 scientists and a host of technicians
years to produce. Yet the paper contains astounding
findings that I'll try to summarize succinctly, for
besides the eight primary article pages from Science
Express, there are 18 additional pages of
"supporting" materials that also contain fascinating
data.

Here is what the paper reports.

In 101 banked samples of PBMCs, 67% (68) were
positive for a XMRV gag sequence. Next, seven of 11
PBMC CFS samples held at the Cleveland Clinic were
shown to have XMRV gag plus env. Only 3.7% of
PBMC DNA from healthy controls had XMRV gag when
tested by PCR.

Amazingly, those gag and env sequences were nearly
identical to those from XMRV from prostate
cancer-associated strains (PLoS Pathol.
2006;2:211).

Full-length SMRV from two patients differed from
prostate cancer strain VP62 by only six nucleotides,
showing again a > 99% identity between the CFS
and prostate cancer XMRV.

A phylogenetic comparison of six isolates from
CFS/Prostate cancer showed them to be significantly
different from other murine leukemic viruses.

In all, 50 other isolates of MLV were used to make
the neighbor-joining trees. The suspected closest
relatives were other xenotropic murine viruses (Xmv
15-19 and Xmv 10, 13, 16) and polytropic (Pmv) plus
modified polytropic (Mmpv) viruses, which were in
fact very removed genetically from XMRV.

Next, it was shown that several antibodies with
"novel viral specificities" all reacted with VP62 XMRV
proteins when grown in several cell lines, including a
line called LNCaP of prostate cells that are known to
permit infection with MXRV.

Flow cytometry of activated lymphocytes also
showed that 19 of 30 PBMC CFS samples reacted
with antibodies to MLV P30 Gag and other MLV
proteins whereas PBMCs from normal patients were
negative, for an odds ratio of 54.1. (confidence
intervals of 23.8-122).

So, there is a non-random association of CFS PBMCs
with XMRV. Both activated T and B cells from CFS
were infected with XMRV.

The next experiment was quite ingenious. PBMCs
from CFS patients were co-cultured with LNCaP cells,
the ones defective in RNaseL pathways.

The LNCaP cells became infected, as shown by
presence of XMRV gag and env proteins and by the
presence of whole virus, as seen by electron
microscope both at the time of infection and upon
release. The electron micrographs are quite
stunning.

The same type of infectivity was also seen when only
plasma from CFS patients was applied to LNCaP
cells. Thus, cell-associated and cell-free virus seems
to be infectious, at least to some cell lines.

Finally, it was shown that 50% of plasma samples
from patients with CFS have a humoral response to
XMRV, demonstrated by presence in flow cytometry
assays of antibodies to a viral env closely related to
XMRV env.

Commentary

It was courageous of Science to publish this paper
because there are obvious epidemiologic data
missing from the report.

Still, patients with CFS can clearly see from this
article the sophistication and dedication of scientists
studying CFS, giving them hope that there will be
some etiologies discovered in the near future.

Indeed, when Robert Suhadolnik and colleagues at
Temple University School of Medicine described the
defects in RNaseL in the mid 1990s, the newer
methods in retrovirology were just emerging so, in a
sense, these new studies had to await the
sophistication that has come with laboratory
advances in the HIV/AIDS era. Good science
(methodology) begets better science.

Esteemed Professors John M. Coffin and Jonathan P.
Stoye of Tufts University wrote an accompanying
editorial in the issue of Science Express.

They emphasize that the gammaretroviruses of mice,
including endogenous MLVs, have given us much
understanding of cancer pathogenesis; no such
association has been made in humans until XMRV
was discovered in prostate cancer tissue only three
years ago.

This work will have its critics. One concern is
laboratory contamination with MLV.

It is very unlikely that laboratory contamination freed
the XMRV into human cell lines. CFS PBMCs and
prostate cancer patients come from very disparate
backgrounds.

Indeed, the patients at the Whittemore Peterson
Institute also come from diverse geographies and,
except for their common diagnosis of CFS, have little
in common.

That fact makes it even more remarkable that out of
nearly 8000 nucleotides in XMRV-a retrovirus only
about 30 show variation.

That lack of genetic variation for XMRV lies in great
contrast to the huge variation we are used to seeing
in HIV, suggesting that XMRV has recently
descended from a common ancestor.

Drs. Coffin and Stoye in their editorial also focus on
the 3.7% of XMRV positivity in normal PBMCs and
non-cancerous prostate tissue. If this rate were to
hold up in studies from other geographic regions of
the world, that would suggest that at least 10
million people worldwide harbor the virus and
perhaps are more susceptible to a wide variety of full
expression of the retroviral infection.

As one of a group of physicians who has recognized
and managed patients with CFS for many years, my
bias is to believe the validity of these current data.

Yet, many theories about the cause of CFS have
come and gone. CFS patients are always looking for
new hope.

Indeed, an article in the New York Times of October
13 by Denise Grady speaks to thousands of patients
already clamoring to be tested for the new virus.

Of note also is that the Whittemore Peterson
Institute was founded by parents of a young woman
with CFS, so the data from Whittemore need to be
verified in additional cohorts of CFS patients.

Nevertheless, the passion of physicians like Dan
Peterson himself, and others in that kindred, has
driven the science of CFS.

Steadfast organizations like our national CFS
foundation, CFIDS (www.cfids.org) , and many state
CFS organizations continue to sponsor patients and
programs that demand a balanced scientific playing
field which in part has led to the quality of work
demonstrated in the paper by Lombardi et al.
 
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cleveland.com Nov 12 09 video

Study suggests link between virus XMRV and chronic fatigue syndrome: a Living Well video

By Plain Dealer guest columnist
November 12, 2009, 5:45AM
Video: Cancer biologist Robert Silverman of the Cleveland Clinic discusses new research that could lead to a breakthrough in treatment for chronic fatigue syndrome

In today's Living Well column, Robert Silverman, a cancer biologist at the Clinic who discovered the virus, discusses the study findings that could lead to a breakthrough in treating the disease, which impacts more than 1 million Americans.

The virus, XMRV, was found in blood samples of more than two-thirds of the patients in the study who had chronic fatigue syndrome, and antibodies to the virus were also detected circulating in the patients.

While this study doesn't prove that XMRV causes chronic fatigue syndrome, it does suggest it as a possibiliity, Silverman said. He hopes it spurs more research that could help people who have XMRV related illnesses.